This started as an online journal in early 2006. At the time, it was a carefree spot for silly diatribes and the occasional photo. Since then, I got pregnant with mono.amniotic mono.chorionic twins, learned one of our daughters had a heart defect, spent 11 weeks in a hospital room and 29 more days with Eva in the NICU and PICU before losing her. We have two children who are alive and thriving and one who didn't make it. For me, this has become that place in between.

Monday, March 22, 2010

Tomorrow will be the anniversary, not of Eva's death, but of her first operation. On this day, three years ago at right about this time of day, I sat by her isolette, crying. Those tears came as a surprise, but once they started, I couldn't stop them for a long time. I didn't know why I was crying at the time, and I have only scarcely a clue now. I think it was just nerves, the mounting pressure, postpartum hormones and the sheer effort of having held my breath in anticipation and fear for those many months. I remember that I was sitting next to a woman who seemed kind and chipper. She was with her eighth child, I believe, a boy who had been in the NICU for months and months. I felt self-conscious crying next to this woman, and weak, while from her phone she doled out chores to her older children with pleasant efficiency and matter-of-factness. The other possibility for why I was crying is that somehow I knew that rather than being at the nadir of this road, as I had consciously believed, some part of my being suspected that I had not yet learned what a nadir truly was.

On this evening three years ago, I held my daughter. Her head was in the crook of my left arm. The cords were draped over my forearm. She was a heavy 4lb 9oz baby (though by then she probably was a little less). I was surprised at how she seemed to sink into me when I held her. I was smiling, beaming really. I was confident. She was holding her stats steady, so I was allowed to continue to hold her as the doctors stood over us and informed us that her surgery would take place the next morning, first case. They would be doing a less invasive surgery because they, too, were confident about her chances. We were relieved and excited. We would finally start our climb to higher ground and put the nightmare behind us.

We never believed in anything other than a full recovery for Eva. We fantasized about bringing her home. It was all we fantasized about. I've never felt complete conviction like that before and I probably never will again.Last night, our carefree Pro.ject Run.way viewing was interrupted by a commercial that rehashed the well-worn "fighter" conceit. You know how it goes. We're fighters, so we win. We beat [choose your disaster]. We conquer [fill in the calamity]. It reminded me of how one of Eva's doctors in the PICU called her that -- a fighter-- said he'd never seen a baby so small fight so hard. And that word and that commercial became a trap door that I fell through last night, because calling her a fighter meant fuck all in the end. In the meantime, here, all around us, are fighters who did win/conquer/succeed/overcome. I am attacked by those stories of gut-listening, those gloating successes that pose as cautionary tales and I want to do violence, but of course, I am not enough of a fighter. I just didn't need any further reminders.

The dark clouds brewing within think that all the fighting and listening and advocating are probably unrelated or at best only tangentially related to one's outcome. The universe is random and cruel. Faith is a waste of time and energy. We have no control and we do not understand. I have no control and I do not understand. In this case, with this child, we did not conquer. We were conquered. All that remains is what we do now.

Wednesday, March 17, 2010

Parenting's best moments are the carefree ones. Unbridled joy, discovery and wonder. Being childlike. Existing in a pure moment. That purity means a kind of blindness to larger patterns, themes, realities, reactions, obligations, consequences, histories. Just a moment and an emotion without regard for what came before and what it might mean for the future.

I am so hung up on sorting, organizing, connecting, understanding, that I am not so good at childlike. My response, pathetically, is to want to work at it. I am earnest if nothing else, but I think it might be hopeless.

I can watch, though, and I can try to record it and I can try in my cerebral and impotent way to let go. I can, as my husband says, try to be more duck-like.

File under progress: We survived the tea party. But really, actually, and somewhat surprisingly, it went well. I might go so far as to say that it was a success. No, they did not let me finish my forensics-style reading of Perfectly Arugula, which was the inspiration for this event. And mostly they just ran in a crazed, locomotive procession of 2 and 3 year-old girls (led by one 6 year-old boy) in a loud and tireless loop through the main floor of the house. But I think everyone was happy. Food was eaten, crafts were made. Eager not to drink alone, I plied the ladies with wine. Silently, a candle was burning for Eva on the family room mantel. When the candle wicks stopped smoldering and the insulin was cresting in the children's bloodstreams, we said our relieved and pleasant goodbyes.

Friday, March 05, 2010

I waste time. Every damn day, I waste time. But you know what, I do it on my own terms. I waste time on things in which I am or could potentially be interested. I don't have any spare time, therefore, to donate to hopeless causes about which I care not a whit.

I donate my time willingly and dutifully to children because there's hope for them.

I do not like to give my time to trifling people over the age of say, 22. I believe that if you are over 22 and your mind is still trifling, then well, go in peace, but not with me.

So, you can imagine my outrage at have just spent 10 perfectly good minutes of my life discussing with a coworker the optimal number of beverage cans that should be cooling in our community fridge at any one time. Let's pause while this thought washes over you. Consider how hair was falling out, cells were dying and synapses became permanently disconnected, collapsing in a withered heap within my cranium while this conversation took place.

Oh, it would be one thing if we were having a light-hearted, enjoyable conversation, punctuated with a knowing shrug, a giggle, a roll of the eyes, maybe. But that was not the case. It was, rather, the kind of stultifying diatribe of beleaguered martyrdom that affects your lifespan, or at least your precious, irreplaceable today.

Thursday, March 04, 2010

My first and second attempts at throwing birthday parties for our daughter were frantic affairs utterly lacking in the qualities that are supposed to define a party -- you know, like fun, for example. If one were to witness these exhausted, cooped-up, late winter birthday parties at our house, one would feel rather sorry for the child being, "celebrated." And one might suggest prescription meds to the host.

But you can cue the Rocky theme music because this year will be different! I have been baking and I have been shopping and I have been planning.

There will be a tea party.

There will be crafts
and scones
and cucumber sandwiches
and hats!

And if those aren't the ingredients in the recipe for three year-old fun, I don't know what is! Gentle reader, does "scone" not equal "fun" in your world?

I'm not fooling anyone, am I?

Do I know what I'm doing? Hell, no. But I am going to feign some confidence, even as I second-guess my every choice and decision:

Am I sending the wrong message to my daughter about gender roles? Will the girls sit still and do a craft? What do I do for Eva? What happens when someone asks about Eva's pictures? Where will I find the watermelon tea that the birthday girl requested? How can I make a handle for the teacup cake I've imagined?
Mainly:

Will I hold it together or will I be deported back to Angstganistan from whence I came never to return to HappyPartyFunLand again?